The impact of the disease on life quality and health concept in young women with Turners syndrome

Beata Wikiera, Elzbieta Szpich, Ewa Barg & Anna Noczynska

The individual development of patients with Turners syndrome (TS) is determined by the illness from the moment of diagnosis. The aim of the study was to determine life quality (QL) of TS patients and their concept of health.

Patients and methods: Twenty-six TS patients aged 1825 who experienced many years of treatment. R L Schaloc, K D Keith Life Quality Questionnaire was used to determine their QL. Their views on health were analyzed on the basis of Health Criteria List by Z Juczyński. The research questions concerned the subjective assessment of QL level of TS patients, the comparison of their lives in chosen categories, and the aspects of the feeling of health, relevant for the group. The study was based on the opinion that the feeling of health is crucial for life activity.

Results: The preferred criteria concentrated on mental aspects of health. Life joy as an element of health was significantly more important for the patients than the perspective of a long life. Health features and the results of health manifestation came second. The result in the category satisfaction reflected the satisfaction felt in connection with the current life and family situation, with a particular impact on the position in the family. In the skills-productivity category the patients interviewed rated the treatment in the work place as the most important. In the category action opportunities-independence was rated as the most important. The category in which the patients interviewed rated life quality as the lowest was social integration.

Conclusions: The focus on the positive aspects of life creates good conditions for using personal assets and coping with the physical aspects of the illness. In their long history of illness, TS patients coped with the stress of being ill to such an extent, which did not significantly affect their subjective life quality assessment.